[Read part one of Sick Child, Sick Food, the story of a mother’s struggle with her autistic? schizophrenic? undiagnosable son, here. Therapy Soup’s interview with Kathleen of Pickl-it continues…]

Falling Behind

Our list of needs kept growing. So many conditions, and so few doctors who had a name for any condition he faced. Every success brought new challenges which we could not anticipate.

Why didn’t our son feel or react to the correct temperature of food, weather or water, perceiving cold as hot, and hot as cold? Playing outside in the New Hampshire winter is life-threatening for a child who sneaks away, removing every article of clothing because he’s “too hot” in 20-degree temperatures! Likewise, 95-degree days are risky for a child who insists on wearing turtlenecks and down-filled jackets.

When he was first adopted, he had no pincher activity—none—which meant he couldn’t pick up small pieces of solid food. We discovered that when you teach pincher activity you might enable a child to rip dime-sized chunks of flesh from his face.

Teach a child to walk and you might end up with a runner. Our son used our 1,400 foot driveway as a “run-away” path, with me giving chase. It was when he veered off the driveway into the 30-acres of woods surrounding our property, that I discovered he was an over-achiever—at least when it came to crawling through low, dense brush.

His birth grandparents had fed him sugar-water and soy-formula. We provided him with solid foods. Teach some children to eat and they choke, gag and pocket food in their cheeks. My son nearly asphyxiated himself at every meal. My husband and I became a skilled team, removing our son from his high-chair, then removing the food from his blocked airway.

At around 24-months, he began self-limiting, demanding “brown food.” Brown food was carb-loaded bread, pasta, crackers and cereal.

Language skills were a mixed bag. He came into this world screaming, and added three words around 30-months of age: “fire,” “tree,” and “wheel.”

He didn’t sleep. Not for naps. And not for more than 20-minutes at a time at night. Usually, he was wide-awake by 4:30 am, ready to begin his day.

Head-pounding occurred all night long, whether he was sleeping or awake. He developed a permanent red-bruise on his forehead. “Leave him alone. It’s the brain reorganizing,” a psychiatrist said.

We wanted to know: How could he self-inflict nasty-wounds, yet scream at the lightest touch?

His screams were really loud—I suffered hearing difficulties when he screamed directly into my year. Yet not only did he tolerate his own screams he appeared to suffer from the sounds of the vacuum or food processor.

We had a lot of questions. Why did bright lights send him scrambling for cover, while he could stare without blinking when he chose?

Why was it so difficult to get him into a car seat, out of the car seat, into a shopping cart, out of a shopping cart, back into a car seat, and so on?

What sounds was he hearing at Costco or Target that we couldn’t hear, sounds that caused him to try to smash his face into ours or against the shopping cart handle?

Why did scents—cologne, fabric-softener, aftershave, deodorant—immediately trigger black circles under his eyes, as well as trigger frantic behavior, making it difficult for him to focus his attention or make eye contact (which was never easy for him, anyway)?

Why, within minutes of eating did he leap off his chair, screaming, clutching his legs, grabbing his upper arms, screaming “Hurt! Hurt!”? Later, when he learned more words beyond “tree, fire, and wheel,” he described the feeling in his head, “like ants crawling in my brain.”

Perhaps the most disconcerting question we had was why Matthew never had a solid bowel movement. Why did they vary in color and and texture, ranging from bright gold, fluorescent green, pumpkin orange, and near-white with the texture and dryness of sawdust?

What were the blister-like sores on his inner thighs that seemed to sprout and expand within seconds of a bowel movement?

Why, when other children enjoyed mid-July swimming at the lake, did our son develop “severe hypothermia,” urinating blood for two days?

Increasing Symptoms

While the school “experts” worked on “providing therapy for him to be educable,” we continued to focus on the ever-changing, increasingly odd behaviors which were also observed by our son’s occupational therapists.

They verified he was difficult to rouse from a trance-like state (which would involve staring into bright lights). Several noticed him carrying on conversations with “make believe friends,” the subject matter violent, as “they” discussed “doing away” with any number of people including us, his family, in order to “gain freedom.”

Unbeknownst to me, his one-on-one aide began physically restraining him for 45-minutes a day, fearing he’d harm himself or another child.

In-A-Gadda-Da-Vida Butterflies

After he entered a public-school early-intervention program, nightmares and night-frights increased. I never knew what to expect when the school bus dropped him off at the end of the driveway. He was either subdued, on the verse of exhaustion or would frantically run up our driveway ahead of me, urging me to help him “catch the butterflies as big as planes” that he saw in what seemed to be visual hallucinations. Sometimes he wanted a ride up the driveway and seethed with anger when I didn’t comply.

Other days he seemed calm until we got into the house, at which point he’d run into the family-room, smashing his face into the brick surrounding it or leap against the sliding-glass doors, his entire body making contact. I learned to keep his hand firmly held in mine until I could determine his mood.

One peaceful afternoon, I was making dinner while he was occupied coloring a picture at the kitchen table. Suddenly, he screamed, his eyes wide with terror. Hiding behind me, he pointed to “a man, standing right there—reading a paper!”

He began hearing voices calling out his name and the sound of loud footsteps running up and down the stairs chasing him down the hallway. His blood-curdling screams in the middle of the night woke everyone up several times a week, always with the same dream—that his room was consumed by fire.

During a psychiatric evaluation he refused to come out from under the table and when he finally did, he ran towards a floor-to-ceiling window, claiming he was going to “fly through it.” The evaluator and I reached him at the same time, blocking him. From then on, all meetings took place in windowless rooms. An acquaintance, a retired psychiatrist commented, “There’s a reason the Navy still codes Autism as schizophrenia.” Another well-intentioned friend suggested exorcism.

Eliminate Physical Origins

There’s value in testing for and eliminating or confirming the existence of proven medical-conditions— brain tumors, seizures, and Fragile-X. Numerous blood and stool panels, as well as EEG, MRI and BEAM (brain electrical activity mapping) tests at Boston Children’s eliminated a long list of possible conditions. That was a good thing of course, but still, we were no closer to having answers.

When and why did you decide you wanted to include a dietary approach in his treatment plan?

From the beginning of our marriage, my husband and I made the commitment that we’d create made-from-scratch meals, abandoning the processed, boxed, canned and prepared foods of our childhood. We had both been sickly, weak children, prone towards colds, strep-throat and infections. From the first day we brought our son into our life, we focused on diet, providing him with the same whole-foods that we ate, avoiding “kid-food”—no hot dogs, boxed mac-and-cheese, or peanut-butter. It was tough. Textures were a problem. Food odors were a problem. Taste was a problem. Foods that were acceptable one day were thrown to the floor the next. There was always the sense that Matthew was searching for sugar, a problem created by his sugar-water and soy-formula diet, given to him for his first eleven months of life. When he was allowed an occasional food containing added sugar, the change in his behavior was dramatic. He could go from calm and sweet to strong-willed and defiant in a matter of seconds.

I started to keep food diaries and noted changes in his moods as well as bowel movements. We had parrots as pets, and watching their “droppings” was a quick way to monitor their health, so it seemed natural to apply the same observation-technique to our son. We tried food-elimination diets, going gluten and casein-free with no obvious changes in his physical or mental well-being.

We were disheartened by the onset of what was thought to be schizophrenia. The psychiatrist was extremely diligent, not wanting to offer a final diagnosis until we had a second evaluation. The first opening was 11-months away so during that time, I continued to keep a careful food log and noted downward spirals in his behavior, attitude, and sleep patterns.

What I discovered was that Matthew’s behavior cycled in a downward spiral every six weeks, beginning with a change in his digestive and waste-elimination patterns. There was no clear connection to any particular food, yet I felt strongly that food was the answer. Experience in providing a healthy diet for our eight pet parrots, had taught me that enzymes, amino acids, minerals and vitamins—in that order—were extremely important for maintaining a healthy immune system. I germinated and sprouted a wide-variety of seeds, grains and legumes for our parrots, avoiding all processed foods which, in the past, had caused yeast and bacterial infections, costing us hundreds of dollars a year in veterinarian and medication costs.

A dietary intervention program is only as good as the food going into the child. I discovered that Matthew’s school program’s detailed Individualized Education Program (IEP) wasn’t being followed. It contained 31 exceptions I’d created in an effort to eliminate food and toxin exposures. I decided to speak to his occupational therapists. It took awhile for the truth to come out, but what I discovered is that each day they were bribing him with candy, gum, and cookies! Even his special-needs bus driver was luring him on and off the bus with Dunkin Donut Munchkins™.

“I don’t know how else we’re going to get your son to obey,” objected an angry behaviorist, because, “only gum works with him!”

Another issue was their refusal to restrict him from using the nurse’s private rest room. The idea that he could use her facility, unmonitored, locking the door and potentially locking himself seemed like a recipe for trouble. Also, the room was loaded with scented products—soap, tissue, sanitizing and moisturizing lotions, as well as air fresheners. All scented products had been banned from our home for over 20 years, a result of good parrot husbandry, as volatile organic compounds (VOCs) were toxic, causing health issues ranging from lung-damage to death in parrots.

One of our ongoing struggles with our son was that when we were in public places, we had to monitor him constantly, keeping him by our side. Any slip on our part, and he’d escape, seeking scented-products, burying his nose, inhaling aromas from scented candles, laundry soaps, cologne testers, and liquid soaps in public restrooms. He was like a junkie, needing a fix. His body immediately reacted, dark circles formed under his eyes; his body movements became erratic and jerky. He often responded with explosive temper tantrums that seemed to come out of nowhere, for no reason.

One of the tens of thousands of chemicals used in air fresheners, carpets, and sanitizing lotions is p-Dichlorobenzene, known to cause hallucinations. Our son was being exposed to sugar, food additives and hallucinogenic-producing chemicals despite our pleas.

We watched as our son’s behavior continued to deteriorate.

It took a letter from our psychiatrist (who thankfully supported us in our concerns), detailing the gravity of the situation, for the school to grudgingly comply. They finally agreed to only give him food we provided and restricted his access to scented products.